After finishing with her surgery early Saturday morning, the doctors kept Abigail sedated until shortly after noon on Saturday. Once they stopped sedation, it took a while for her to come out of it, but as she did, she was not happy. Understandably!!
She kept kicking her foot to express her displeasure.
Before she was all the way awake, but when she was awake enough to breathe unassisted, they extubated her, at 1:10pm. (Also removed the catheter.) Then they all sat there and watched her carefully for several minutes to see how she would do. This girl did great! I remember Dr. Tiva saying, "She's breathing on her own, Momma."
As she came to, her first word, at 1:30pm, was "ow-ie" then she hugged her blanket. :(
Some oxygen to assist her; such a good helper to hold it!
Our first good look at her incision - this was at 1:35, about 13 1/2 hours after surgery ended. A nurse in the operating room had done a french braid to help keep her hair out of the way.
Her next words, at 1:45pm were "Mommy" and "I want my water bottle". Everything was said so quietly we had to lean in to hear and her voice was obviously super raspy.
Special delivery dancing, singing flower from Aunt Kelly and family!
Post-surgery, they did another MRI to get an image of how much was left. This is what the neurosurgeon shared with me.
Before:
After:
They got most of it and the remaining parts were too risky to resect.
At 2pm, Abigail said, "My legs hurt!" and then at 3:30, "Water, water". Then she asked, "Is it ready yet?" in reference to the food we told her was almost ready 24 hours previously when she was super hungry and about to go into surgery. It was a good sign that she could remember that! But despite saying that, she was not interested in food and we could not get her to eat anything.
Saturday was mostly spent like this - trying to rest. I think I convinced Andrew to go home for a bit and get some rest. He ended up staying every night in the hospital with Abigail except one that I did. Our routine was that I spent the days and he the nights.
Later on Saturday:
By Sunday, Abigail was a little more awake. And a lot more grumpy! Can't blame her for that.
Grandma Larsen flew in on Saturday night so Sunday morning she, Candace, and I went to Sacrament Meeting with the kids. Candace had originally planned to leave on Friday so hadn't packed for Sunday but we made do. After Sacrament Meeting, I went to the hospital and Andrew headed home. Like Saturday, Abigail spent most of the day sleeping. She was sad when it was time for me to leave that night.
Good thing she had Daddy to hold her at 1:30am when she couldn't sleep.
Monday was sad for me because Candace and her kids left to head home. She'd gotten us through so well and it was sad to see them go! But they had tons of things they needed to get back to at home and we had Grandma Larsen to help hold things together here.
We tried on Monday to get Abigail to eat, offering her anything and everything just to get some calories in her. Since Wednesday night, she'd only had one meal - dinner after her MRI on Thursday. She wasn't really going for the food though. On Monday, she did take a couple sips of chocolate milk and ate about 3 frosted flakes.
Poor miserable girl!
The pediatrician stopped by on Monday morning and told us her hearing problems saved her life. Blunt, but true. There were no other symptoms that suggested anything was wrong. We're so thankfully to the ENT, Dr. Idicula, for ordering an MRI. The speech therapist came to visit too, to clear her for solid foods. Until Monday, the only food they brought in for breakfast, lunch, and dinner was broth. No wonder she wasn't eating! The speech therapist got her to nibble some graham crackers, drink some milk, and take a couple bites of ice cream and was satisfied that she could handle solid foods.
Lots of cards and gifts to entertain her!
Unfortunately, even with being cleared to eat anything, Abigail wasn't showing much interest in food. Her doctors decided, prematurely we thought!, to place a feeding tube on Monday. Worst experience ever! It took 4 nurses, plus me holding her legs, to get it in. Abigail was screaming and thrashing, yelling, "Can you stop that right now?!" It was horrible to watch. I was openly crying by the time they placed a bridle to hold the feeding tube from being pulled out. We were not happy they'd decided to put one in. Especially over the next few days as it made NO difference and she threw up everything they put down the tube.
From then on, Abigail was very suspicious of any medical personnel, even for simple things like taking her temperature, and to anyone who came in her room she'd ask, "Can you take this out?" So sad!!
Besides the awful feeding tube experience, Abigail did have some good accomplishments on Monday. She got out of bed and went for a very short walk with lots of support. She went to the bathroom twice. And she was begging to go home with Daddy and Mommy. Very hard to say no to.
Check out that hair!
Overall, Abigail was awake a lot more on Monday and not necessarily grumpy, just very sad and unresponsive.
Still no biopsy results, but we did meet with the oncologist who told us he wouldn't give an official diagnosis or decide on treatment plans until they got a second opinion, probably early the next week. But he did say that it looked like cancer. Not great news.
Also on Monday, we were transferred out of PICU and relocated to the regular pediatric floor.
Getting ready for transport!
Abigail's new room was nice and large and had it's own bathroom - big plus for us and her!
Resting before I left for the night:
How sweet is that face???
When Andrew came to take over, the sweetest thing happened. Although she still wasn't talking much, Abigail spontaneously did the "I love you" sign to Andrew. Melted my heart - so of course I took a picture.
I tried to wait for her to be asleep every night before I left so she wouldn't see me go. Some days I was more successful than others.
Andrew took this picture around 4am on Tuesday morning to show how Abigail was moving around more to try to get comfortable for sleeping - a good sign!
On Tuesday, Abigail got a visit from and her sisters and Grandma Larsen! Eve and Halle had appointments with the orthopedic specialist about their leg braces (to see how things were going) in an adjoining building, so it made sense to just bring everyone for a visit!
Cora wasn't thrilled to be in the picture....
The older girls would cooperate :)
Still not a look of responses from Abigail. She was very quiet most of the time and was throwing up all the time. Andrew said she was doing good at nights though - no throw up then.
This was her facial expression most of the time. I never thought I'd say it, but we were desperately missing our crazy, unstoppable, loud little Abigail!
Abigail did get her first post-surgery sponge bath on Tuesday, which was MUCH needed. She did not enjoy it, but being clean probably felt good? We were already going through lots of gowns regardless (with all the throw up). [Even now, two months after the fact, when she has throw up, she says, "I need a new gown!"] She also took a short walk again.
Unfortunately, we got a visit from the surgeon who told us that he'd seen the pathology report and they'd been unable to identify her tumor. So instead of getting a first opinion, then waiting for a second opinion from the Mayo Clinic, they were now just waiting to see what the Mayo Clinic said.
They did a rapid MRI on Tuesday because they were worried about her incessant nausea. No sedation since it was only about 5 minutes, but I went into the machine with her to help her hold still. Not the most comfortable for either of us - me laying on top of her trying to hold a semi-push up position so I wouldn't squish her. It was so loud! My first MRI :)
The results looked fine, so it wasn't a brain issue causing the nausea.
When Daddy arrived that evening, he came bearing Frosty gifts in an attempt to get Abigail to eat something. She took a few bites but nothing more.
We had started bringing a new set of books in every day because Abigail wasn't very interested in TV. Bedtime stories from Daddy are the best!
We were originally hoping to go home on Wednesday, but that didn't happen. But we were introduced to the magic of the caterpillar wagon! Abigail was in love! You can't tell by her facial expressions, but once we went on her first walk, she never wanted to get out and back in bed. She kept asking for more, which was huge since she only said a few words a day.
The weather was nice, so we even we outside briefly!
Abigail ended up falling asleep in the wagon because she didn't want to get out. So sweet to see her enjoy something, even a little.
Overall, Wednesday was another day of battling nausea and stomach pain. They tried different meds and formulas with no improvement so finally did an x-ray and determined that the feeding tube was incorrectly measured (4 cm too long) and was pressing into the bottom of her stomach, likely causing the pain she’s had. Ah!!! We were not thrilled with this whole feeding tube experience. It was a disaster from the start. Anyway, they resituated the tube and removed the bridle (looping through the inside of her nose to keep her from pulling the tube out) and she seemed much more comfortable.
Someone also came on Wednesday to give me all the supplies needed and show me how to use the feeding tube at home. They weren't sure she would be going home with it, but with the Thanksgiving holiday, it was better to be prepared just in case. I was really hoping we could avoid taking that horrible thing home with us!
I spent the night with Abigail on Wednesday.....we were looking forward to an abnormal Thanksgiving!
